'I would be dead now if not for new cancer drugs'

CANCER patient Sarah Garelick fears the special chometharapy drugs that have helped her fight advanced breast cancer may be unavailable after plans to change the Cancer Drug Fund are introduced on April 1.

The retired teacher was diagnosed with advanced breast cancer in 2010 and after exhausting all other options her oncologist applied to their local health authority for Fund cash to buy treatments which would not otherwise have been available on the NHS.

Sarah, from Coventry, is now on the third of these lifeline medicines, a chemotherapy drug called Eribulin which is derived from sea sponges. It is the first new type of chemotherapy to be developed in 20 years but was ruled too expensive by Nice although, as Sarah asks: “Expensive in relation to what?”

The drug buys an average of three months extra life for women who have no other hope but Sarah has been using it since November and some women who have taken part in trials of the treatment were still alive 34 months after starting to take it.

“It is fantastic stuff, I have not felt ill at all,” says Sarah. “I was expecting to write off days as I have with the other drugs.”

Sarah told the Sunday Express she did not know whether she would continue to get the treatment after next week and admits: “I do not want to think about it.

“I know that there is only so much money in the pot but let’s have a look at how we are spending money in different parts of the health service and where you can make savings to put money into the Fund.

“It would be totally wrong to drop something like Eribulin when so much is spent on agency staff in the NHS.”

Some patients already receiving treatment through the Cancer Drug Fund fear their access will be blocked when the changes take effect a week tomorrow. Others, who are in the closing stages of their battle with cancer, are being left in limbo because local health authorities have been told to put decisions on hold until the new national body takes over the process. Dr Daniel Rea, a cancer specialist at Queen Elizabeth Hospital in Birmingham and a senior lecturer at Birmingham University, says: “We don’t know how it is going to work but it has to be working in less than 10 days. I have great misgivings about it. Patients will fall through the net.”

Andrew Wilson, chief executive of the Rarer Cancers Foundation, the charity which played a pivotal role in the Fund’s creation, adds: “More than 26,000 patients have benefited from treatments funded through the CDF but delays in clarifying how it will work in the restructured NHS put its success at risk.

“We still do not know how the Fund will be run in April or what drugs will be routinely funded. Patients and doctors want answers and reassurance.”

Dr Andrew Wardley, clinical director of chemotherapy at the Christie Hospital in Manchester, says: “Communication has been very poor, nobody really knows what is happening.”

It's not yet clear what drugs will be funded by the new Cancer Drug Fund

It would be totally wrong to drop something like Eribulin when so much is spent on agency staff in the NHS.

Sarah Garelick

Dr Rea agrees: “It is all being rammed through very, very fast, without sufficient time for consultation.”

Currently, doctors put the case for a patient to receive a costly drug to the Fund which is administered through their Strategic Health Authority, but SHAs will cease to exist on April 1 as a result of NHS restructuring. From then all decisions will be made by the National Commissioning Board.

Worryingly, doctors still have no idea which cancer drugs will be funded from April and which will no longer be available. A spokesman for the National Commissioning Board says that the list of approved drugs will be released “shortly”.

Doctors have not even been given details of how to log into the computer system to lodge an application or had the chance to identify any bugs with the technology, says Dr Rea.

“It will have to work from day one. We may have a situation where computer says ‘No’ and we have to get into a detailed discussion with someone. I suspect it will not work but we do not know because no one has given us any good detail about it.”

However, a spokesman for the National Commissioning Board says: “Work is underway to ensure systems and processes are in place and functioning ready to receive applications from April 1.”

The £200million-a-year Cancer Drug Fund was set up in 2011 to help patients in England access treatments which have not yet been approved by the National Institute for Health and Clinical Excellence (Nice). Andrew Wilson, of the Rarer Cancers Foundation, says: “There is evidence that patients getting drugs this way are still alive today who might not have been.”

Professor Chris Twelves, a cancer specialist based at St James’s University Hospital in Leeds, was involved in a major trial of Eribulin, the drug which has worked so effectively for Sarah.

He can only say it is “almost inconceivable” that an effective treatment would be withdrawn from a patient who was already receiving it, but adds: “It is entirely understandable that she feels anxious and vulnerable when in such a parlous situation; the lack of information about how these changes will be handled has been a cause for concern to all of us.”

The Department of Health and the National Commissioning Board claims all patients already receiving treatment through the Fund will continue to get their current medicines.

However, a spokesman for the Board could not guarantee that new patients would have access to these successful treatment in April.

Dr Rea warns: “We do not know where they will go with this list. will they use some clinical common sense or apply some arbitrary rule?”

He fears that access to Perjeta, another lifeline breast cancer drug, may also be threatened, and says: “We do not know, because we have not seen the list.

“We have not had a chance to say: ‘Hang on guys, that is really silly’. There has been no provisional list put out for discussion or comment. Even if it comes out tomorrow we will not have enough time to respond.”

There is even greater alarm about what will happen next year, when the Fund is wound up and access to medicines is based on a new value-based pricing system directly linked to the benefits that a drug can deliver.

Earlier this year a parliamentary report from the health select committee warned that the Government has done little to explain how the system will work in practice, despite the plans being under discussion since 2010.

A survey of 200 oncologists in England found 82 per cent feel the end of the CDF will mean access to cancer medicines in England will be worse than the rest of Europe and 75 per cent are calling for future funding to ensure patients do not lose out.

It is estimated that more than 44,000 patients will benefit from the Fund over its lifetime and almost 17,000 patients are anticipated to have access to treatment between April and early 2014 when it ends.

Then, says Andrew Wilson: “There is a risk that access to treatment will go backwards, returning us to the dark days of cancer drugs being denied to the patients who need them.”